Kennedy illness symbol in health debate

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Sen. Ted Kennedy is a rallying force for advocates of health-care reform.

With his own health flickering and the cause of his life within reach, Sen. Edward M. Kennedy is a rallying force for advocates of national health care reform.

Absent from Washington but eager to influence the debate, the cancer-stricken Kennedy recently wrote in Newsweek, “Every American should be able to get the same treatment that U.S. senators are entitled to.”

Kennedy’s quote, however, highlights another—and more problematic—way that the Massachusetts Democrat is an emotion-laden symbol of this summer’s roiling reform debate.

The uncomfortable truth, according to health care experts, is that most concepts about lowering health care costs involve patients and care-givers becoming more disciplined about resisting the kinds of aggressive medical treatments Kennedy has pursued to battle his brain tumor.

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By these lights, the problem is not that too few Americans have access to the kind of care that Kennedy is receiving. The problem is that too many Americans avail themselves of expensive treatments that may extend lives at the margins but have low prospects of actually saving them.

Of course, it’s difficult to say exactly how much is being spent on Kennedy’s care. His Senate office declines to discuss his treatment. And, unlike most Americans, Kennedy has access to a vast family fortune that enables him to pay for treatments any insurance policy might not cover.

So, while not critiquing the specifics of Kennedy’s treatment, some medical ethicists said his case shines the light on the cost-versus-benefit questions that need more honest discussion by voters and politicians.

“What messages are being sent by the behavior of people in leadership positions?” said Harvard ethicist James Sabin, speaking of Kennedy.

Sabin recalled the powerful impact on the economic debate of Warren Buffet, one of the wealthiest men in the world, who declared publicly that he ought to pay more in taxes. “If Kennedy spoke of health care choices in the same way, it would be more than mouthing off,” said Sabin, a Harvard Medical School clinical professor and director of ethics at Harvard Pilgrim Health Care.

Given that about a third of Medicare dollars are spent on patients in the twilight of life, Sabin and other experts say a rethinking of treatment for them is essential to reducing costs in the system – a major goal of reform.

The medical choices of the man who has become the face of the universal coverage movement are a delicate subject, particularly with Kennedy’s own health so precarious. He recently asked the Massachusetts legislature to change the state law for U.S. senatorial succession, to ensure his seat can be filled quickly in the event of his death.

But one of Kennedy’s most important Republican counterparts in the health care debate—Sen. Charles Grassley of Iowa—-recently plunged in, invoking Kennedy’s illness to raise the specter of rationed care.

“In countries that have government-run health care, just to give you an example, I’ve been told that the brain tumor that Sen. Kennedy has — because he’s 77 years old — would not be treated the way it’s treated in the United States,” Grassley told a radio interviewer. “In other words, he would not get the care he gets here because of his age.”

Supporters of Obama’s reforms, neutral policy experts – and even the British — have called Grassley’s rhetoric bogus. The various plans moving through Congress do not envision the kind of inflexible, by-the-numbers government rationing that Grassley warns of, and Democratic lawmakers rebuff any suggestion they would allow age discrimination in medicine.

That hasn’t stopped the issue of “death panels,” as former Alaska Gov. Sarah Palin has called them, from bedeviling Obama, who has struggled to debunk the notion that government bureaucrats would have the power to block treatment to people they consider bad bets.

Yet the president himself has circled around —without answering directly—the question of whether some care is simply too expensive for the minimal benefits.

In an interview with the New York Times earlier this year, Obama described how his grandmother, suffering from terminal cancer and a heart condition, had a hip replacement -- and then died weeks later.

While saying he would have gladly paid out of his own pocket for the new hip, he added, “Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question.”

Kennedy, too, is suffering terminal cancer, which was diagnosed in May 2008 at Massachusetts General Hospital, a premiere cancer facility.

From what little is known of his care, he, too, is opting for maximum treatment despite a grim prognosis. Only 5 percent of patients who have the same type of brain tumor live for more than two years -- and most of them are younger than the 77-year-old senator.

Just weeks after his diagnosis, Kennedy tapped the vast array of health care specialists he’s come to know through his Senate service or personal experiences to convene an extraordinary brainstorming session about his own treatment.

According to a New York Times account, Kennedy summoned more than a dozen experts from at least six academic centers, some of whom flew to Boston while others joined in by telephone. The upshot of the meeting appears to be a vigorous, proactive shift in his treatment.

His Massachusetts doctors initially said he’d receive radiation and chemotherapy to combat the tumor. But, after the Boston consultation session, he wound up flying to Duke University Medical Center, another top brain cancer center, to undergo complex and risky surgery to remove parts of the tumor. The surgery was done by Dr. Allan H. Friedman, a renowned leader in the field.

Since then, he’s undergone proton-beam radiation at Massachusetts General Hospital and multiple rounds of chemotherapy, he said in his Newsweek account. The senator offered no insight into the pharmaceuticals he is taking – though cancer drugs are some of the most expensive in medicine, some of which can cost as much as $50,000 a dose, according to medical reports.

Kennedy’s care is being paid for by his Senate health insurance policy and his own money, according to his essay.

By most accounts, the intensive treatment has helped him beat the odds and hold on longer than many medical experts expected. Close associates of Kennedy say, however, it has been a brutal regime, one that could enlighten medical research for a longer time than it extends his life.

Medical research is at the heart of one of Obama’s favored parts of the health reform bills, a move to expand so-called “comparative effectiveness” research.

Obama’s budget director Peter Orszag regularly invokes such research as a way to save money. But “comparative effectiveness” research is designed to steer coverage toward economical treatments shown to work and away from expensive treatments that might not get better results and could even create new risks or hardships for the patient.

He often cites a 2008 Dartmouth Atlas of Health Care study that found wide variations in spending at teaching hospitals that didn’t produce better results for patients. The University of California-Los Angeles Medical Center spent $93,842 per patient compared to the Mayo Clinic’s $53,432. But the end results were the same: The patients all died within two years.

“The notion that’s been presented that we’ve got to ration care is just fundamentally wrong,” said Elliott Fischer, director for population, health and policy at the Dartmouth Institute. “It’s not about denying care. This is about making sure they get the care they want and no more.”

Another example: A 2007 clinical trial that found no difference in patient results when treating early coronary disease with prescription drugs rather than surgery. When the study was made public, there was a dramatic decline in heart surgeries, which are more expensive and also much more traumatic for patients, according to Dr. Raymond Gibbons, a Mayo Clinic cardiologist who helped conduct the trial.

Still, skeptics say the question of what treatments work best is highly uncertain given the unique characteristics of each patient.

Dennis Smith, a senior fellow at the Center for Health Policies at the conservative Heritage Foundation, says such research is a valuable resource. “The more knowledge a physician has, the better,” he said.

What unsettles Smith is that the administration is linking that data to controlling costs. That association could stifle research and the sort of innovative treatment that Kennedy is receiving that can lead to breakthroughs.

“It is not in our imagination that people in the future will be denied access to the latest technology,” said Smith.

Mark McClellan, a former Bush Administration health adviser and advocate for reform, said comparative effectiveness research isn’t designed – nor should it be – to guide end-of-life decisions.

“The type of illnesses people have near the end of life these days are getting more complex,” he said, noting that patients can suffer from two or three diseases – heart problems, diabetes, dementia -- at the same time.

“I don’t think there is any easy solution or theory that a comparative effectiveness study” could provide, he said. “I also don’t think there is any political support for imposing those kinds of new coverage rules on seniors.”

That sentiment appears to begin with the president.

After his musings in the New York Times about whether the hip replacement done on his ailing grandmother was a good model for broader public policy, he shifted voice from that of a president to that of a grandson.

“If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life – that would be pretty upsetting,” he said.